"How will we cope?" Couples With Intellectual Disability Where One Partner Has a Diagnosis of Dementia.

BACKGROUND AND OBJECTIVES: People with intellectual disability are at increased risk of dementia at an earlier age. This is the first study to explore experiences of couples with an intellectual disability when one partner has dementia. RESEARCH DESIGN AND METHODS: Four people with intellectual disability whose partner had dementia and one partner who had both an intellectual disability and dementia took part in narrative life story interviews. One of the interviews was conducted as a couple giving direct perspectives from 4 couples overall. Additionally, 13 semistructured interviews were conducted with 9 social care professionals and 4 family members. This provided perspectives of the relationships of a further 4 couples, which collectively led to data on 8 couples. RESULTS: The emotional impact of a dementia diagnosis, planning for the future, and fear of separation was noted by couples with intellectual disability. Partners took on caring roles thus challenging views of being solely care-receivers. Families spoke of commitment and longevity in relationships, whilst social care staff highlighted how their own information needs changed recognizing the importance of intellectual disability and dementia-specific knowledge. DISCUSSION AND IMPLICATIONS: Couples with intellectual disability continue to enjoy intimate relationships into later life and will face common conditions in older age including dementia. Those who provide support need to ensure that they are sensitive to the previous experience and life story of each couple and have specific knowledge of how dementia can affect people with intellectual disability.

A person-centred approach to implementation of psychosocial interventions with people who have an intellectual disability and dementia-A participatory action study.

BACKGROUND: Numbers of people with an intellectual disability and dementia present a global health and social challenge with associated need to reduce stress or agitation and improve quality of life in affected individuals. This study aimed to identify effectiveness of psychosocial interventions in social care settings and, uniquely, explore use of photovoice methodology to develop dialogue about dementia. METHODS: This mixed-method participatory action study used individualised goal-setting theory with 16 participants with intellectual disability and dementia, and 22 social care staff across 11 sites. Five co-researchers with intellectual disability were part of an inclusive research team collecting data using existing and bespoke tools including photovoice. Analysis used descriptive and inferential statistics and framework analysis. RESULTS: Seventy four percentage of individual goals met or exceeded expectations with reduction in some "as required" medication. Qualitative findings include themes of enabling care and interventions as tools for practice. Photovoice provided insight into previously unreported fears about dementia. CONCLUSIONS: Individualized psychosocial interventions have potential to reduce distress or agitation.